Monday, November 05, 2007

Harper Government Urged To Take Serious Action To Address Canada's Autism Crisis

A number of key federally based autism organizations in Canada have united to demand a serious response by the Harper government to the Canadian Senate committee on autism funding recommendations to address Canada's national autism crisis.

Autism Society Canada

Autism Canada Foundation

Canadian-American Research Consortium

Autism Speaks Canada

Autism Treatment Services of Canada

Geneva Centre for Autism

Nov 05, 2007 08:47 ET

Collective Voice of the Autism Community in Canada Calls on Government to Take Steps to Establish National Autism Strategy

OTTAWA, ONTARIO--(Marketwire - Nov. 5, 2007) - The Conservative Government has provided its response to the Standing Senate Committee recommendations on Autism in its Response to the Report of the Standing Senate Committee on Social Affairs, Science and Technology, Pay Now or Pay Later: Autism Families in Crisis, tabled on October 17th, 2007.

Good news in the federal response is the announcement of a new Autism Research Chair at Simon Fraser University focusing on the study of treatments and interventions. Autism organizations are encouraged to see more focus on applied research and best practices. In addition the government has promised further funding for ASD research in general, has committed to hosting a fall research symposium and is promising more investigation into the potential for developing national surveillance on ASD.

The response states that "the Government of Canada acknowledges the complexity of the challenges related to ASD and agrees with the Committee that there is much work to be done to enhance collaboration and evidence on this issue..." Autism advocates across Canada had hoped that the federal government would take a stronger position in response to the report, which provides unmistakably clear direction. A number of key organizations are coming together to urge our federal government to take a clear leadership role in confronting what truly is a national problem.

Last December, the Standing Senate Committee investigating Funding for the Treatment of Autism heard from hundreds of families, adults with Autism Spectrum Disorders (ASD), experts in treatment and service delivery, researchers and Autism advocacy organizations across Canada - representing the over 200,000 children, youth and adults affected by ASD in this country. These figures, which are sobering enough, do not represent the true number of Canadians affected by the lack of adequate action and services for ASD. Parents, other family members and caregivers are also deeply affected, emotionally, socially and financially.

In its ground breaking report entitled, PAY NOW OR PAY LATER: Autism Families in Crisis (March 2007) the bi-partisan Senate Committee recommended some urgent initiatives that the federal government could implement over the next two years in response to the crisis situation faced by many individuals with ASD and their families.

Most importantly, both Conservative and Liberal members of this Senate Committee called on our government to develop a comprehensive National Autism Strategy to address the complex needs and glaring inequalities in public funding and access to targeted services and treatment across the country.

ASD typically presents lifelong challenges to those individuals diagnosed as well as to their family members and to society as a whole - a comprehensive national plan is vital.

The government declined to take up the Senate's recommendation to lead the way forward in committing to a National ASD Strategy. In spite of receiving hundreds of hours of testimony from all concerned; well-vetted and honed down by a dedicated committee of Senators, it seems that: "... governments do not yet know enough about ASD and its treatments to implement effective and well-informed strategies that would lead to meaningful outcomes,...". The 12-page response is very focused on knowledge gaps and provides a great deal of information about current special needs programming - little of which is Autism-specific.

Our government's Senate Committee also supported fully the recommendation of a federal/provincial/territorial ministerial conference to look at innovative funding arrangements for the purpose of financing Autism therapies, defining essential services and looking at new family support measures but the government has also declined to take up this recommendation. With the exception of First Nations and Inuit communities, the response is in keeping with federal practice and places all responsibility for health and educational funding decisions on transfer payments and service delivery squarely on the provinces and territories. This is in striking contrast to the U.S. policy dealing with the same funding crisis: the United States' Combating Autism Act of 2006 authorized the federal government to spend $US 945 million over five years for Autism research, screening, intervention and education. Last week the joint U.S. House and Senate conference committee approved $37 million for this year's spending on autism services and treatment programs alone.

While progress has been made, it is clear that Autism Spectrum Disorders have not yet found their rightful place in the health, education and social service sectors at any level of our governments. Working in the Autism field, we hear daily the stories of the mental and financial hardship that parents, family members and many adults with ASD experience. We are deeply concerned about the shortage of services; we recognize from first-hand, on-the-ground experience, the urgent need for qualified professionals to work with individuals with ASD.

Immediate action is needed to address these glaring gaps.

Now that this response has clearly acknowledged the seriousness of the pressures facing families and individuals with Autism - we hope the next step will be for our federal government, in cooperation with all of the provinces and territories, to take a leadership role with respect to Autism. Our growing stakeholder Alliance of ASD advocates and professionals working in the field provides an excellent and willing collaborative resource to assist this government in taking up the Senate's call to develop a comprehensive National ASD Strategy to address the lifespan issues of individuals with Autism Spectrum Disorders. If our government is seeking input in developing such a strategy, the expertise is certainly available.

We call on the Canadian government to embrace the recommendations of its Senate and to show the leadership we so badly need to address this crisis as other countries have done. We all feel strongly that a National Autism Strategy must be formulated very soon and that developing this strategy should be vigorously pursued.

1 comment:

Anonymous
said...

my son quaellen is nine years old and just now is being diagnosed with autism ODD ADHD and developmental co ordination disorder and tourettes syndrome. he is a very smart boy but because of social impairments does not get to go to birthday parties and does not have kids over. often times this devastates him because he has the desire to be social. this has been difficult for our family but until i get the official diagnoses he gets no funding what soever. i am saddened and angry because i know of other parents who either decided to give up their children or entetained the option of because fosterparents are offered more money, support, resources for care of these children. i know for a fact that foster children have bypassed the waiting lists for the assessment clinics because mcf can push them through quicker.my son and my friends children deserve better than that. none of us should feel that we have to give up our children to have better care. we know our children better than anyone. why am i having to go on ei. i am unable to work half the time because nobody can take care of my son. i will do what i have to for him but why are mothers not being paid the same amount as a level 3 foster home to look after our children. with support in the end would cost the government less money. there are alot of other things for the ministry of children and families to justify their jobs with. somebody needs to get with the program. 9 month and longer for diagnoses and another 6 months or longer for funding is a joke.

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The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.